Whitehouse Floor Remarks on the ALS Disability Insurance Access Act

Mr. President, one of the things that marks service as a U.S. Senator is the chance to meet really remarkable individuals, and among the remarkable individuals I have had the chance to meet in my time in the Senate, there are few, if any, who are more impressive or memorable than those who have been diagnosed with ALS, commonly known as Lou Gehrig’s disease.

Competing with them for being impressive and noteworthy are the friends and family and advocates who become their support system and their caregivers. It is not just those with the diagnosis, but it is also the family, friends, and caregivers who face incredible bravery. I remember someone once saying that a special kind of courage is maintaining good morale in the face of terrible circumstances, and few circumstances are more terrible than a diagnosis of ALS amyotrophic lateral sclerosis.

We know how it ends. We know it is always fatal. There is no treatment. There is no cure. There is nothing to halt or reverse the effects of ALS. Those of us who have ALS patients visit us watch the decline as they move from people who can walk to people who need a wheelchair, to people who need an increasingly complex wheel-chair.

For all this suffering and for all the certainty of how it ends, we still make ALS patients and their family members wait 5 months before they can begin to receive the Social Security Disability Insurance benefits they earned by contributing into Social Security.

The logic, I am told, of this 5-month waiting period is that it allows temporary conditions to abate, but ALS is not a temporary condition. It does not abate. It does not reverse. Sadly, some ALS patients lose their fight with the disease before even receiving benefits.

I have been working with Senator Cotton to pursue bipartisan legislation to eliminate this 5-month waiting period for ALS. Chairman Hatch, in one of his final acts as chairman of the Finance Committee, expressed his approval of this and his desire to help me bring it forward, and Ranking Member Wyden on the Finance Committee has helped get it to the floor so we can have this opportunity to pass it by unanimous consent.

I hope very much that as a simple act of humanity, we can step aside from bureaucratic considerations and allow this small population of Americans who face the extraordinary blow of this diagnosis to move immediately to the benefits they signed up for by contributing to Social Security.

With that, I would yield the floor to Senator Cotton of Arkansas.

Mr. COTTON. Mr. President, I thank the Senator from Rhode Island for his work on this important issue. I have had numerous ALS sufferers and family members of those who suffer from ALS approach me about this bill early in my time in the Senate, and I have been grateful for the opportunity to work with the Senator from Rhode Is-land to try to address this very sad problem.

ALS is a progressive and disabling disease for which there is no cure. It is fatal in all cases. Unfortunately, like almost every other condition, ALS sufferers are required to wait for 5 months before they receive the Social Security Disability Insurance benefits they have earned; that they earned through a lifetime of paying taxes into Social Security.

I understand the purpose of this 5- month waiting period is to weed out temporary conditions, but ALS is not a temporary condition—or to prevent fraudulent claims, but it is hard to imagine anyone making a fraudulent claim on disability based on an ALS diagnosis. The average disability beneficiaries expect to receive benefits for about 20 years, but, unfortunately, those who have been diagnosed with ALS only have a life expectancy of approximately 3 years. Therefore, the disability waiting period of 5 months means that those on ALS will lose, on average, nearly one-seventh of the benefits they have paid a lifetime for. Of course, some will lose a lot more be-cause of ALS’s particularly degenerative nature. They will lose their fight to the disease before they ever become eligible for their disability benefits.

This legislation will simply ensure that those patients and their families can access the benefits they paid into as soon as possible by waiving that 5- month waiting period for disability benefits in this one exceptional case.

I understand there is objection about singling out the particular disease or condition. I would, however, say ALS is itself a singularly exceptional condition, and any sufferer of ALS deserves our sympathy, our prayers but also our action on the Senate floor.

I also understand there is objection to the cost of the legislation, which would be $270 million over 10 years—no doubt a lot of money to all Americans—but frankly a small rounding error in the Federal budget. For that matter, it is less than the amount of money for the piece of legislation that is pending on the floor today—a criminal leniency bill that would cost $352 million over 10 years. If we are prepared to allow legislation to go forward that slashes sentences for serious drug traffickers and let sex offenders out of prison early, even though it costs $350 million, I would suggest it is a misplaced priority to object to legislation because it costs $270 million. So I hope, along with the Senator from Rhode Island, that we can pass this legislation in this week before Christmas and give some small measure of solace to those who are suffering from ALS and their families.

I yield back to the Senator from Rhode Island.

Mr. WHITEHOUSE. Mr. President, I ask unanimous consent that the Finance Committee be discharged from further consideration of S. 379, a bill to eliminate the 5-month waiting period for disability insurance benefits under such title for individuals with amyotrophic lateral sclerosis; that the Senate proceed to its immediate consideration; that the bill be considered read a third time and passed; and that the motion to reconsider be considered made and laid upon the table with no intervening action or debate, as we come into this Christmas season.

The PRESIDING OFFICER. Is there objection? The Senator from Utah.

Mr. LEE. Mr. President, reserving the right to object, I first became aware of amyotrophic lateral sclerosis when I was in the fifth grade, and I read a story, a book, and later a series of books about my childhood hero Lou Gehrig, whose name is often used synonymously with this terrible ailment. It is a tragedy that his life was ended and helped bring about the end of his 2,138 consecutive game playing streak in Major League Baseball.

This is a horrible disease, a progressive neurodegenerative condition that rapidly attacks the nerve cells in the brain and spinal cord and eventually it affects the control of the muscles that are needed to move, to speak, and even to eat and to breathe. Sadly, it is always fatal.

The bill now under consideration will grant a waiver from the Social Security Disability Insurance waiting period to victims of this terrible disease, no doubt with good, noble intentions, but what we have to remember is that this is not the only tragic disease Americans are dying from. Unfortunately, there are many others out there that are equally debilitating and equally fatal, and the Federal Government should not pick favorites to legislate from among them.

Indeed, this kind of policy and approach to policymaking poses several problems. First, it sets the precedent that some diseases or disabilities deserve preferential treatment and not necessarily with a distinction that sets them apart from that disparate treatment. It would undoubtedly open the door for exemption requests for a myriad of other groups who advocate for worthy causes, including any of the 233 compassionate allowance conditions that are already given expedited review for SSDI.

I have gone through that list and looked at that list and it contains a lot of other horrible, debilitating deadly diseases, among them non-Hodgkin’s lymphoma that claimed the life of my father 22 years ago, along with a whole lot of other diseases that are deadly, that are painful, that are debilitating, that result in the incapacitation of their victims.

On top of all that, this approach will set the stage for only those diseases that have the most recognition and the most political backing to find bill sponsors, while others sit at a relative disadvantage with conditions that are more rare and underfunded.

Furthermore, while I am happy to consider working on the waiting period issue, we cannot do so without taking a larger look at SSDI as a whole and its sustainability. We cannot ignore the fact that Social Security is facing long-term insolvency with the DI Trust Fund set to run out in 2032, even sooner than the Old-Age and Survivors Insurance Trust Fund is set to expire and from which it has to borrow funds.

It is undoubtedly a noble intention to help those with ALS, but we will never have parity if we legislate disease by disease, especially among and between diseases that are comparably debilitating. I said it is incoherent and un- just to pick one favorite group where there are others that are every bit as deserving.

On that basis, I object.

The PRESIDING OFFICER. Objection is heard.

Mr. WHITEHOUSE. Mr. President, let me go on the record to say how much I disagree with my colleague’s view of this; the notion that we can’t help anyone until we can help everyone is simply not the way the world works. The notion that we can’t help anyone until we have solved whatever financial problems he sees in Social Security, again, means we will help no one.

I do believe Lou Gehrig’s disease is a sufficiently distinct illness, with an in- evitable fatality, and the slow loss of function for the individuals involved as the disease takes away, one by one, their various abilities to stand, to speak, and eat. I think it does set it apart.

If the Senator has other illnesses he thinks are equally cruel and equally lethal that he would like to add to the list, then I think we should consider that. The notion that we cannot help fellow Americans with this disease because we haven’t solved other problems is one I categorically reject.

I yield the floor.

The PRESIDING OFFICER. The Senator from Utah.

Mr. LEE. Mr. President, I respect- fully, most vehemently disagree with the characterization made by my distinguished colleague, the Senator from Rhode Island.

This is not, with all due respect, an instance of ‘‘we can’t help anyone until we help everyone.’’ That is a blatant mischaracterization of the facts. We have already 233 conditions that qualify for the compassionate allowance category.

If you look through those, they are full of debilitating, life-threatening conditions. Those categories already do receive expedited treatment. They al- ready are in a category where they have to be reviewed and a decision has to be made within a set period of time—I believe, within the range of 5 months.

That is a good thing, but it is simply not accurate. In fact, it is blatantly misleading to suggest that my argument here boils down to the notion that we cannot help anyone until we help everyone. That is not true. It is the point here that unless or until we can make a distinction between this condition and the other 233 conditions that are on that list, I see no valid basis—other than the fact that this one has more political support and, perhaps, more financial backing—to draw that distinction here. I think it is unfair to those who benefit from and will need to invoke the need for Social Security disability insurance to put it in an even less sustainable posture moving forward.

Yes, in an ideal world we would like to say no waiting period for anyone. In an ideal world we would like to not have anyone have to wait for these sorts of things, but we do have, in our government, a susceptibility to claims that are not substantiated, and we also have people who have to review them. In the absence of a perfect system, it may not be possible. It certainly isn’t going to be possible for us to make this program sustainable if we can’t put meaningful limits on it. Again, I am all for finding ways to shorten that waiting period as much as we possibly can. I have yet to hear an argument that sets this condition apart from the others in this category of 233 compassionate allowance conditions.

Thank you, Mr. President.

I yield the floor.

Mr. WHITEHOUSE. Mr. President, I simply note that the Senator seems to be making precisely the argument that he is denying that he has made.

I yield the floor.

The PRESIDING OFFICER. The Senator from Utah.

Mr. LEE. In no way, shape, or form am I making the argument that we cannot help anyone until we help everyone. That is a mischaracterization of the argument I am making.

I am arguing that if, among and between these 233 categories, we can make no principle distinction between this condition and the others, we are mistreating those other people. Who is going to stand here for them? Today, I am going to. On that basis, I object.

Mr. WHITEHOUSE. Mr. President, at the Senator’s desire, he may add any of those whom he wishes, and we will consider that going forward. Unless and until he does that, we are in a position that unless we are helping all of them, we will help none of them.

I yield the floor.